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A week after I was first diagnosed, I went back to the clinic today to get my results:

Viral Load: 57,465CD4+, CD3+: 730CD4+, CD3+ (%helpers): 37%

I have to say I was relieved that my T-cell count was that high, I guess I was expecting a low number to just compound on the rest of my feelings.

They did fax the results over to a couple of doctors that I have picked out to see, so hopefully one of them can see me in the next few days so we can chart out a plan. My guess is going to be that he won't recommend meds right away because of the good T-Cell number, but in a way I would be much more comfortable with a lower VL number as well.

I guess another option is to go back in a month or so for another set of labs to see what the numbers do, but in a way I just want to get into a routine and get as much uncertainty behind me.

Guess I was hoping for some feedback on the numbers. My CD4 and % number was higher then I expected. I was estimating that I was infected about a year before I tested positive based on when I was last sick, but perhaps I never had any sickness as a result of infection? Also wish the VL was lower.

no one in public knows you're positive. all those people you see in the stores, some of them are negative, some of them are positive. you have no way of knowing.

the privacy of you're medical information is safe.

at the end of the day, it doesn't matter how or when you were infected. it doesn't change anything now, or in the future.

slow down, take it easy, don't get overwhelmed by everything that is coming at you.

information on the internet is unreliable, don't let everything you read throw you into worry. educate yourself, but again, don't be overwhelmed. it is easy to get confused by seemingly contradictory information.

be extremely cautious about who you disclose too. you cannot unring the bell. its been my experience that everyone you tell, will tell someone, and they will tell someone, and so on. even family.

go to the support group. continue with your life. hobbies are great. don't let your life be consumed by hiv.

lastly, take a deep breath. look in the mirror, tell yourself you're going to be ok. believe it.

I guess it's a matter of letting the numbers fall and eventual getting on meds, or starting meds with high numbers and hoping they just get better. Is that even possible?

Well there are 2 different schools of thought on that, one is that you should go on meds immediately regardless of the numbers, even good numbers such as yours, in order to preserve the immune system. The other is to wait until the numbers fall and you absolutely have to go on meds (somewhere I think between 300-500cd4's) in order to avoid any undue side effects from the meds themselves. You should speak to your doctor about which route to take. I think in Europe they lean towards treating immediately, in the US not so much.

Well there are 2 different schools of thought on that, one is that you should go on meds immediately regardless of the numbers, even good numbers such as yours, in order to preserve the immune system. The other is to wait until the numbers fall and you absolutely have to go on meds (somewhere I think between 300-500cd4's) in order to avoid any undue side effects from the meds themselves. You should speak to your doctor about which route to take. I think in Europe they lean towards treating immediately, in the US not so much.

-W

My first doctors appointment is tomorrow (just a couple of days after my first lab results) so we'll see what happens.

Since this'll be your first Dr's appt, it won't be necessary to decide on an immediate course of treatment. There are a few things I'd suggest beforehand. Since your numbers are great, you have some time to research.

The MAJOR issue that I way underlooked for too long was the importance of a great health care professional. Make sure you are comfortable with this doctor and build rapport and trust. Don't settle for any doctor that you feel doesn't have your absolute best well being health as a priority.

As Willy mentioned, there are differences of opinions even in the health field regarding when to start meds. Read and study some legitimate sites to understand both sides of the debate. Ultimately, you'll be the one who has to decide.

Continue to reach out for support, even if it's only here. I never realized how valuable it would be to discuss everyday issues with others who empathize.

Since this'll be your first Dr's appt, it won't be necessary to decide on an immediate course of treatment. There are a few things I'd suggest beforehand. Since your numbers are great, you have some time to research.

The MAJOR issue that I way underlooked for too long was the importance of a great health care professional. Make sure you are comfortable with this doctor and build rapport and trust. Don't settle for any doctor that you feel doesn't have your absolute best well being health as a priority.

As Willy mentioned, there are differences of opinions even in the health field regarding when to start meds. Read and study some legitimate sites to understand both sides of the debate. Ultimately, you'll be the one who has to decide.

Continue to reach out for support, even if it's only here. I never realized how valuable it would be to discuss everyday issues with others who empathize.

Wolfie

I actually had the clinic fax my results to two different doctors, so I have one appointment today, and the other couldn't see me until the end of November. My plan was exactly as you describe, choose a good doctor. I'm not going to pre-judge either, I just want to find someone who has my best interests in mind.

I did find it funny the the clinics preferred method of transmitting my results was via fax machine. And neither doctor would allow me to just walk in with my results, they both required they get them via fax, then they would set up an appointment. I guess the fax machine at the doctors office is pretty secure, but I think an encrypted PDF file might have been safer and more secure!

Hello WindySkies,Great #s you have there for starting out on this journey. I too was a little surprised that your test results were sent via a fax machine. All my information between my IDS and my PCP is sent using an encrypted PDF file. The information is then stored on a flash drive. The information that my IDS collects is stored on their servers. I never get a paper script for meds because that too is sent electronically to my pharmacy. I view my labs on line so no nosey mailcarrier sees that I visit a major hospital's Infectious Disease Clinic.Billy

First doctor visit is behind me now. He pretty much confirmed every thing I have been reading about. He said my numbers were good except for the VL. He recommended I start on Complera as soon as possible.

He said that getting the VL under control sooner than later would be best and I pretty much agreed with him. He gave me a prescription for a 1 year supply and told me not to start taking it until I go to the lab to get blood drawn for the resistance panel, and a bunch of other stuff. Once that blood has been drawn he said to start on the meds.

He also suggested going to see my primary doctor to get vaccinated for a bunch of different things like flu, hep, pneumonia, etc.

On the positive side I had thought that hearing that I should go on meds would be a bit of an emotional hurdle for me, but it really didn't affect me. I figure it's better to just go with it all and keep plugging ahead.

WindySkies,Since you haven't started meds yet I want to offer you a suggestion that I discussed with my doctor when I started. I told my IDS that I wanted to wait one month until I had a second refill of my meds before I started so that I would have a months stockpile in case something happened. He was fine with this and scheduled my return appointment to compensate for my later start date. By sometimes getting my meds refilled a few days early I have increased my extra meds to about two months. I take great comfort having this safety net and I always use my older meds first.Billy

WindySkies,Since you haven't started meds yet I want to offer you a suggestion that I discussed with my doctor when I started. I told my IDS that I wanted to wait one month until I had a second refill of my meds before I started so that I would have a months stockpile in case something happened. He was fine with this and scheduled my return appointment to compensate for my later start date. By sometimes getting my meds refilled a few days early I have increased my extra meds to about two months. I take great comfort having this safety net and I always use my older meds first.Billy

When I was discussing meds with him he was very straight forward in telling me that if I ever got into a position where I couldn't obtain meds, to call him right away and it wouldn't be an issue. He even gave me a card of a pharmacy that he said is 'very generous' when helping out people with HIV meds.

I don't foresee any issues that will cause me to run short in the future, but I will build up a supply on my own just in case.

I'm curious how people are able to collect extra by getting their prescriptions a few days early? The prescription he gave me is for 12 total fills of 30 which is 360 pills, 5 short of a year. How do I get ahead?

When I was discussing meds with him he was very straight forward in telling me that if I ever got into a position where I couldn't obtain meds, to call him right away and it wouldn't be an issue. He even gave me a card of a pharmacy that he said is 'very generous' when helping out people with HIV meds.

I don't foresee any issues that will cause me to run short in the future, but I will build up a supply on my own just in case.

I'm curious how people are able to collect extra by getting their prescriptions a few days early? The prescription he gave me is for 12 total fills of 30 which is 360 pills, 5 short of a year. How do I get ahead?

My insurance (BCBS) allows 8 extra days in a six month period to compensate for the months with 31 days. Also since February is a short month I picked up a few extra that way. When a month has 30 days then I refill one or two days early. I just call ahead and they can tell me in a second if they can be refilled early. I all so use the patient assistance cards for Truvada & Isentress so I have no copay!

The reasoning behind me having this stockpile is in case of some kind of major natural disaster or problems with the drug manufacturers or god forbid I were to loose my job and insurance and have to wait to get help from ADAP. I live in NC and we have had a waiting list for awhile.

Most insurance also will allow a certain number of "overrides" by your pharmacy per year, that allow a prescription to be filled earlier -- say 10 days as opposed to the standard 5. Just tell the pharmacist in a few months that you're going on vacation out of the country for several weeks and see what he says.

Most insurance also will allow a certain number of "overrides" by your pharmacy per year, that allow a prescription to be filled earlier -- say 10 days as opposed to the standard 5. Just tell the pharmacist in a few months that you're going on vacation out of the country for several weeks and see what he says.

Miss P,I was straight forward with my pharmacist and told him what I was doing and most times he will put the early refill date on the bottles when I pick up my meds. Billy

Windy Skies, it sounds like you have a good attitude towards the meds and it's great you are ready to start.

My only question would be, why did your doc write a prescription w/o seeing the results of a resistance profile? If it turned out that you were resistant to one of the meds in Complera, then getting that rx filled is potentially a waste of time. Or am I misreading your post?

The odds are there won't be an issue, but still. Your numbers are fine, it won't hurt to wait a few weeks.

Windy Skies, it sounds like you have a good attitude towards the meds and it's great you are ready to start.

My only question would be, why did your doc write a prescription w/o seeing the results of a resistance profile? If it turned out that you were resistant to one of the meds in Complera, then getting that rx filled is potentially a waste of time. Or am I misreading your post?

The odds are there won't be an issue, but still. Your numbers are fine, it won't hurt to wait a few weeks.

You are spot on with your question. I did ask him the exact same thing and he said the chances are so low he's not worried about it. If for some reason I am one of the 'lucky' few who are resistant, I guess my insurance just blew $2,000 for nothing!